The fourth annual DART to the Finish charity walk to benefit Dana’s Angels Research Trust (DART) is scheduled for Saturday, September 25, 2021, and will be held in-person at Greenwich Point Park and virtually anywhere else in the world. DART is a Greenwich, Connecticut-based nonprofit that funds research for the rare childhood disease, Niemann-Pick type C (NPC), which is often referred to as children’s Alzheimer’s. Registration (which is a tax-deductible donation to DART) is $25 for adults and $10 for children ages 10 to 21 years of age. Registered walkers receive a DART to the Finish t-shirt and are eligible for gift certificate rewards when they refer other friends and family members to sign up. To learn more and register, visit danasangels.org or dartevents.org.
Dana’s Angels Research Trust was founded by Andrea and Phil Marella of Greenwich after two of their four children, Dana and Andrew, were diagnosed with Niemann-Pick type C disease (NPC). Dana sadly passed away in 2013 at age 19. But Andrew, who turned 22 in June, is doing better due to being enrolled in a clinical trial to slow the progression of the disease.
“The need for funding crucial NPC treatments and research has never been more important than it is today,” noted Phil Marella, co-founder of DART. “The NPC community was stunned earlier this year when Mallinckrodt Pharmaceuticals suddenly abandoned the Adrabetadex clinical trial, of which our son Andrew and other NPC children have been a part of for more than seven years. Fortunately, in June 2021, the court approved the sale of Adrabetadex to Mandos, LLC, which will allow the medication to continue to be used in the clinical trial. We have seen first-hand the results of this medication with Andrew and the other NPC children in the trial. We know how important it is to continue access to it and other treatments and to work with the FDA on approving potential treatments that can save these children’s lives.”
DART has been instrumental in being part of an NPC Therapy Accelerator program supporting the work of more than 12 companies currently developing treatments for the disease, two of which are in the later stages of regulatory review with the FDA. DART and the NPC community are also helping launch newborn testing for NPC — the largest newborn pilot testing program in the United States — thanks to the leadership of Firefly Fund, its founders, the Andrews family of Austin, Texas, and with financial assistance from the Ara Parseghian Fund, DART and others. The ScreenPlus testing is being led by pediatric genetic expert Dr. Melissa Wasserstein, in conjunction with the New York State Newborn Screening Program, and will roll out this fall with the goal of screening 175,000 newborns. This is the largest newborn screening pilot study in the U.S., backed by $11.3 million in funding from the National Institutes of Health, industry sponsors and patient advocacy groups. It is the hope of the NPC community families, including the Marellas, Andrews and Parseghians, that other families will not have to go through the lengthy, complex journey to find a diagnosis, and that treatments and cures can be accelerated.
NPC is so rare that only about 200 children in the U.S. have been diagnosed with the disease. and only a few, including Andrew, live in Connecticut. This devastating genetic disorder robs a child of the ability to live a long, healthy life, often becoming fatal in the teenage years. But, DART is helping to change that fate. As a nonprofit organization, DART’s events like DART to the Finish, help raise funds to support pivotal NPC research — research that may also help millions suffering from Parkinson’s disease, HIV/Aids, Ebola, heart disease, stroke, Alzheimer’s disease and other disorders that appear to be related to cholesterol.
“NPC is a brutal disease,” noted Phil Marella, co-founder of DART. “It impacts neurological and motor functions in young children and is caused by a malfunction in the way the body stores and processes cholesterol. While this disease has impacted our family for 20 years, we have only seen promising progress in treatment options in the past ten years — specifically a clinical trial that our son Andrew is enrolled in that has helped him deal with the devastating impact of the disease.” Andrea Marella added, “This clinical trial and other research into NPC is made possible only through the generous donations of our friends, community and sponsors. Holding the DART to the Finish charity walk is our way of doing something fun and raising much-needed funds at the same time.”
To date, DART has raised $5.5 million that has gone toward the search for a better treatment and ultimately a cure for NPC. DART is particularly proud of its commitment as a founding member of a unique, collaborative drug development program called SOAR-NPC or Support Of Accelerated Research. Working with other NPC families and research institutions, SOAR’s collaborators have four clinical trials already to their credit.
To learn more about Dana’s Angels Research Trust (DART) or to register for the DART to The Finish Walk, visit dartevents.org. To learn more about Dana’s Angels Research Trust (DART), visit danasangels.org, on Facebook @danasangels, Instagram @danasangelsNPC and Twitter @danasangels.